Assisitive Technologies in rehabilitation servicesIs the sky really the limit?

Prague, 8 September 2011

Jan Spooren, Secretary General EPR

The limits and risks of AT

An assistive product A product that no

one wants!

Paradigm shift in disability field

From medical model to social model

Paradigm shift in health and social services

From public programming regulation to market-based regulation

Modernisation of disability and social services sector

Modernisation

• Mainstreaming/partnership • Inclusion / maximise potential • Empowerment• Decentralization

• Demonstrate added value • Quality assurance• Competition: tendering• Market analysis and orientation

Positive & proactive approach

High level expertise

The limits and risks of AT

An assistive product A need not created

and unexpected

Use of AT in rehabilitation – Preliminary remarks

Assumption: Disabled and elder people wish to lead independent lives in a familiar environment.

AT are not new and their use has never been uncontroversial.

Technological advances will considerably expand the areas in which AT are used.

Literature is critical of the technology-driven nature of AT development.

Care should be taken that AT supports communication.

Assistive Technology (AT) – Definition

Any item, piece of equipment or product system, whether acquired commercially, modified or customized, that is used to increase, maintain or improve functional capabilities of individuals with disabilities.(The US Assistive Technology Act of 1998, Section 3)

AT has the potential to help people with disabilities to live in the least restrictive environments and attain their personal and vocational aspirations.

(Peterson DB, Murray GC. Ethics and assistive technology service provision. Disability and Rehabilitation: Assistive Technology 2006;1:59–67)

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AT and Telecare

AT&T = the delivery of health and social care to individuals within the home or wider community outside formal institutional settings, with the support of devices enabled by information and communication technologies(Tang P, Curry R, Gann D. Telecare: new ideas for care and support @ home. Bristol: The Policy Press, 2000.)

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AT – universal design

Assistive technology which is not guided by the universal design concept may benefit people with disabilities but result in separate and stigmatising solutions, for example, a ramp that leads to a separate entry to a building from the main stairway. Universal design strives to be a broad-spectrum solution that helps everyone, not just people with disabilities and it recognises the importance of how things look.

(Perry J, Beyer S, Holm S. Assistive technology, telecare and people with intellectial disabilities: ethical considerations. J Med Ethics 2009;35:81-

86.)

75% of AT professionals believe that persons with disability do not receive the AT that they need

Assistive product as a successful solution is very

knowledge demanding and needs technical

expertise of various domains

Experience of rehabilitation professionals

CS 1: Knowledge about the products and their functionality

Risks Too many and complex products Different skills needed (communication, mobility, computer

access, orientation) and continuous updating “one-size fits all” mentality Not sufficient evidence-based practice

Solutions International and national professional network using electronic

information resources defining outcomes measure for the AP documenting the AP service – product and service provided educating/ involving the client in the evaluation of the AP

CS 2: The assessment process

Multidisciplinary team and flexible and continuous Person-centered approach Task analysis (real-life scenarios) and site trials Full participation of client document the assessment Education/ training of the team, including the

client

Þ Tremendous breadth of knowledge is required to service delivery of AT

Risks high or low expectations the AT says “she/he has a disability” “what is good for him is good for me” mentality AT as decision making is predominantly a trial and error

process due to the “lack of a valid predictive model” to direct the selection of devices

Solutions

Þ empower consumers by providing them with the information they need to make informed choices

Þ involve the client in the initial processÞ role of family/ peers to value psychosocial health and quality of

life

CS 3: Expectations of the person and stigma associated to the AT

Risks AT service as a PRODUCT AT service does not finish with the AT product supply time lapse between need and provision

SolutionsÞ include within the AT service training and on-going trainingÞ follow-up actions and processes in place Þ (re)assessment is a continuous process

CS 4: Need for an ongoing process

Risks Studies show that up to 75% of AT devices are abandoned within 3 years

It may not always work as intended in every possible situation It doesn’t “grow” with the client It may break It may encourage the consumers to rely on (imperfect) technology instead of

developing their own skills Families not accepting of technology.

Family members from varying cultures may have different perceptions of the need for technology.

Consumer or his/her family doesn’t want to “stand out” by using the technology. School or workplace not accepting of technology.

SolutionsÞ Awareness raising and informationÞ Follow-up actions and processes in place Þ (re)assessment is a continuous process

CS 5: Sustainability and durability of AT

Þ is like a positive catalyst - it participates in the chemical reaction,

speeds it up, but is not consumed by the reaction itself – it must be

there but forgotten!)

Client skill and competency development

Maximum independence

Full participation in society

AT is a tool and not the goal or outcome on itself

Ethical questions related to AT

What forms of personal care and contact are abandoned with the use of AT?

What consequences arise when responsibility for the monitoring and quality of intervention is delegated to machines and informal carers?

Which services must be established or made accessible to ensure that patients receive integrated care and that technologies can be embedded in the domestic environment?

Which particular problems arise in terms of data protection?

What is necessary to ensure that all those in need have access to AT and that no one is disadvantaged?

What requirements does technological development need to meet from an ethical perspective?

Ethics connected to relationships provider vs. user

Privacy: personal data protection! (Privacy Laws: personal/medical information of individuals).

AT: from non-invasive (without operation/intervention into the body) to invasive (operation: integrated circuits, pumps etc.: invasion in the integrity of human being).

Position: provider is in a superior position towards the user (inferior position).

Power: provider has power over the user (weakness).

Reliability: Providing regular and irregular services/repairs (for software and hardware).

Ethical guideliness for the use of AT

Privacy: an individual shall be able to control access to his/her personal information and to protect his/her own space.

Autonomy: an individual has the right to decide how and to what purposes he/she

is using technology.

Integrity and dignity: individuals shall be respected and technical solutions shall not violate their dignity as human beings.

Reliability: Technical solutions shall be sufficiently reliable for the purposes that they are being used for. Technology shall not threat user's physical or mental health.

E-inclusion: Services should be accessible to all user groups despite of their physical or mental deficiencies.

Benefit for the society: The society shall make use of the technology so that it increases the quality of life and does not cause harm to anyone.

Source: Analysing and federating the European assistive technology ICT industry, Final Report, March 2009

ASSISTIVE TECHNOLOGY

MARKETPROFESSIONAL & USER

ORGANISATIONS– Lobbyists– User organisations

FINANCING ORGANISATIONS

– Financing agencies (public and private)

– Social security systems– Insurance organisations

TECHNOLOGY-ORIENTED ORGANISATIONS

– R&D organisations (rehabilitation & technology-oriented)

– Universities– Standardisation organisations– Testing organisations

INDUSTRIAL ORGANISATIONS

– Manufacturers– Dealers– Wholesalers

INFORMATION, SERVICE & TRAINING

– Service delivery institutions– Institutional users

(rehabilitation centre, hospital, school etc.)

– End-users

GOVERNMENT & LEGAL ORGANISATIONS

– European Commission– Government at various

administrative levels: national, regional, county and municipal.

The variety of actors who participate – directly or indirectly – in the AT ICT industry

Core drivers and barriers for AT ICT technology

• Core drivers – Knowledge of the disabled end-user– Knowledge of the diagnostician, prescriptor of product solutions– Knowledge of the rules and procedures of different national service provider

systems in Europe, but also reimbursement schemes– Flexibility in product design to be able to serve different geographical markets

• Barriers– The lack of knowledge by the marketplace of the types of solutions available (i.e., not

all possible AT ICT solutions are included in national service provider systems). – The cost and time needed to navigate the different national service provider systems

in Europe in order to ensure compliance– The different interpretations of national service provider systems at the regional level

(thereby fragmenting a national market into regional markets)– The lack of a coherent social policy for subsidising/reimbursing assistive

technology products and the lack of coordination between the stakeholders involved. – High assistive technology ICT equipment prices (i.e., which result in lower overall sales

volume).

Industry as a key player for AT ICT technology

Interest shown by Industry still quite fragmented Mainly restricted to specialised niches Danger: Industry at risk of not recognising the people with

disabilities and older people as target groups showing an interesting potential.

Major international industries developed accessible products due to the market demand generated by specific US regulations, and most such products are still available only in the US.

European signal (see eInclusion driven calls within FP6 and FP7 as first step), both large–players and small and medium size enterprises

Developing an appropriate EC legislative framework to stimulate the inclusive approach

Purchase of AT ICTs by end user

The medical oriented model: Starting point is the handicap where the physician initiates

necessary procedures and must approve the need for listed and reimbursed AT based on medical arguments.

The social oriented model Based upon national legislation and local and decentralised

execution, and involves national/local agencies that coordinate the provision and funding of AT, often also after the person with disability is evaluated by a panel of medical experts (like in the medical oriented model) to define the degree of disability, and the access to subsidies.

The consumer oriented model: The end-user has direct contact with a retailer in order to get

his/her AT product (e.g. personal budget).